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The Hyperacusis Network Message Board
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jayhybrid

Registered: 09/07/09
Posts: 53
Reply with quote  #1 
So I've been taking Neurontin since October for migraines associated with my head injury. 3 weeks ago my neurologist pulled me off Neurontin and placed me on a different medication to help with some other symptoms I've been having. Almost immediately, my hyperacusis (which had regressed significantly) came back as pronounced as ever. I told my neurologist this, so he started me back on a small dose of neurontin to see if it had any effect. I've been on it 4 days now and my Hyperacusis has regressed significantly. Coincidence?

Has anyone else ever been prescribed neurontin and had similar benefits?

I don't know - maybe I by accident stumbled upon a medication that helps reduce this awful disease.
Johnloudb

Registered: 07/31/09
Posts: 1,728
Reply with quote  #2 

Hi Jay,

Yeah, some drugs can help with hyperacusis. I know the Elavil anti-drepressant help with my ear sensitivity, but it caused me other problems as I increased the dosage. 

I don't use drugs because people build up a tolerance to them, and can also become dependant. But, not saying they are not helpful to some.

I think the doctor probably should have pulled you off the drug gradually. I had to get off Elavil gradually ... seems most neurological drugs need tappering off.



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aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #3 
Hi Jay,

There are some other threads where people mention  Neurontin, (and I wonder if that is the same as Lyrica?)  - though I am personally not familuar with it. But have seen posts about it.

you meentioned-
I don't know - maybe I by accident stumbled upon a medication that helps reduce this awful disease.

Wheather you find a medication that helps you in some way, or appears to help or not....the way we think about things can have a lot of impact. And I find it helpful and prefer  to think of hyperacusis and also tinnitus - as conditions.
I've never thought of either of them as a disease. And personally would not do that. For some they may be symptoms of something else, but that still does not make them a disease. (at least i don't think so.)
And I do think the way we think about things and what we tell ourselves when it comes to these challenges, and so much else in life as well  - can be very important in how we view things. And sometimes that can make a really big difference.

Wishing you and everyone here better days ahead. And much improvement.
Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #4 
Hi Jayhybrid,

Neurontin seemed to help me significantly with hyperacusis too, & I know that one other poster here has believed the same of Lyrica, another nerve-stimulation de-exciter.
After being off Neurontin for many months, I tried a natural form of Gaba, a powder form in a capsule, for a few months & it too made a difference; I was doing quite loud things daily which in all reality were probably excessive.
But that made a noticable difference immediately.
I stopped after those activities ended over a month ago.
Though my activities have been less loud this last month...I've noticed an increase in hyperacusis.
Recently I saw a TMJ dysfunction dentist who ruled out this as a component but still strongly felt that my problems could be helped by methods to ease nervous stimulation relating to the ear.
Like my oto-neurologist early on, this practitioner prescribed Neurontin & really encouraged it at a low dose of about 400 mg/day.
He actually said his top choice would be to first try a liquid version of a natural Gaba as the powder & dry capsule natural formulas potencies diffuse in the proces of digestion, & liquid absorbs more directly.
I was surprised that 400 mg Neurontin was what he prescribed as sufficient (split doses through day) as it is a pretty low dose; I had been taking 900 mg w/oto-neurologist prescription (also a lower dose than many are prescribed - but one I would not want to try to exceed).
I actually forgot about the liquid neurontin search but plan to try it.
A couple people here over the years have reported reactions to Neurontin or withdrawl but talk to a doc who widely prescribes it & they all seem to say they've never encountered problems.
Just something to be mindful of with any substance, herbal or natural ones included.
Stop - as John mentioned -
AND start gradually I would think would be safest.

Bottom line, yes, there seems to be ample anecdotal evidence here that anti-convulsant meds can buffer sound tolerance for at least some people.

Debbie

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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #5 
Hi Kieth, btw, would you mind sharing what doses of Neurontin seem to have helped you?
You have implied that the second dose may be smaller than the first & I'm wondering if there is a difference in the levels of help you notice between the two doses.
Also, I'm wondering if you might share some examples of what you mean by sound tolerances increasing.
That is, in terms of any regular activities you noticed you could do without problems on Neurontin which you have discomfort with while not on it.
Lastly, I'm wondering about how you may or may not have noticed Neurontin affecting tinnitus, if you have tinnitus.
We have not collected this type of information from posters systematically, when something seems to be helping, and I think it is a worthwhile thing to do, to grow a base of anecdotal evidence which could inspire additional study.

Thanks for any input,

Debbie

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Marilyn

Registered: 11/20/09
Posts: 194
Reply with quote  #6 
Jayhybrid, I'm interested in hearing what kind of accident you had and your story. 

The onset of my hyperacusis occurred suddenly because of a gunshot over 3 years ago.  Because of my sensitivity to sound and ear pain, I thought my ears were damaged and had begun wearing ear plugs all the time, except when I was asleep.  My family doctor prescribed neurontin in July.  She was looking for anything that would help me with my ear and head pain, and thought since it's used for ear neuropathy, we could try it.

She prescribed 100 mg. 3 times a day for a total of 300 mg daily.  I split the dose and took 100 mg a day to start with.  I saw a vast improvement.  This lasted a few weeks and then I needed to increase the dose to notice relief from pain.  By early November, I was taking the full 300 mg a day and couldn't tell it even touched my pain anymore.

On November 20, I stumbled upon this website and found there was a name and treatment for my ear injury, 'hyperacusis' and I found a doctor knowledgeable in TRT.  Before my first appointment in early December with my doctor, I weaned myself off neurontin.

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cbBen

Registered: 12/16/07
Posts: 1,378
Reply with quote  #7 
I'm happy to say that I do -- Dr. Margarett Jastreboff.
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aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #8 
Ben you mentioned-

You may feel better, more like you did before hyperacusis, but based on my experience I would not advise going to loud places (movies, concerts) just because you may feel much as you did pre-hyperacusis.  Again, based on my experience, you may in fact NOT be the same or near the same, and accordingly be best advised to raise your tolerances systematically before delving back into the world of loud noise.

That is really interesting. And sounds like a good perspective for folks to keep in mind.
Thanks for your perspective on that.
And the best of everything with your treatment, hope it goes as smooth as possible! :-)
groovybaby

Registered: 10/12/08
Posts: 36
Reply with quote  #9 

I've been on Neurontin for 9 years and I will never stop taking it.  My neurologist put me on Lyrica once and as soon as I was off Neurontin, the Hyperacusis pain was horrible.  Neurontin is not a cure but it's the best we have to live a normal life with Hyperacusis.


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jayhybrid

Registered: 09/07/09
Posts: 53
Reply with quote  #10 
It's true - as soon as they took me off my neurontin during a hospital stay - the hyperacusis came right back FIERCE. Back on it - it was tolerable again in 2 days.

I'm on a combo of depakote and neurontin and am wearing sound generators most of the time. In the past few months I'd say I'm about 50% better, and only having real issues maybe 20% of the day.
aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #11 
HI Jay,

You mentioned-
Quote:
It's true - as soon as they took me off my neurontin during a hospital stay - the hyperacusis came right back FIERCE. Back on it - it was tolerable again in 2 days.


Thanks for the information. What you mention is Part of why I feel it is Very important for people with hyperacusis, (and hyperacusis related misophonia if present) - to work on improving tolerances to sound in ways that are helpful and appropriate for one to do so - and not rely on medication, especially as a long term solution to, as Debbie put it earlier in this thread -
"buffer sound tolerance"

I had mentioned to Debbie not too long back -
"It's important to actually rebuild one's tolerances levels to sound,
and be able to reacclimate to sound .
Please do not misunderstand, if the medication  you mentioned before in other threads)  was helpful to You, I am not disputing that- but  with these challenges I think it is really imperative that we actually improve our tolerances- not rely on medication - to make things "seem" like they are better."


If people choose or need to take medication,  and find it helpful, I can understand that, these challenges can be very difficult.

But I think one should also (even if they are taking medication and it seems to help) take appropriate steps to improve one's tolerances to sound. To reacclimate and desensitize to sound, in ways that helpful and appropriate for one to do so
( on an individual basis, as what is right for one may be different, in some ways,   for someone else.)
I think it is very important for people with hyperacusis to do that.
And you bring up one of the reasons I feel that way.......
Another is what would happen if someone found the medication they needed to be able to tolerate even moderate  levels of sound  interacted with something else they had to take - at a latter time?
 
I am glad to hear you are doing lots better! And I think it is wise, that you are not solely relying on medication to help improve your tolerances to sound.

Thanks for your input, I think it's very important  for people to know about what you mentioned.
BonnieBeth

Registered: 07/27/05
Posts: 553
Reply with quote  #12 
Jay,

I've been taking Neurontin since January, 2003.  I began taking Neurontin as a  replacement for a drug I took previously for 12 years called Tegretol.  I take Neurontin for an adult onset seizure disorder, not for migraines, although it is excellent for migraines and they are sometimes related to seizures.

I didn't get hyperacusis until July 2005.  Although I was already taking Neurontin for 2 1/2 years it did not help me at all during that time.  But that's probably because I got my hyperacusis from an MRI test, and maybe because the Neurontin was already in my system.

If you begin taking Neurontin after you get hyperacusis, maybe it can help reduce the symptoms.  It just didn't work in my case.  It would be an interesting experiment though...what would happen if I went off Neurontin?  Would I suddenly see the worst of my hyperacusis symptoms return?  There's no way I'll ever know because I don't think I'll ever stop taking Neurontin (QB, the generic name is gabapentin).

I'm pretty sure if Neurontin is given for migraines and you suddenly go off, the migraines can return very severely.  It's all part of the rebound process, I think with any drug you go off there is a rebound of symptoms.  That's even true when you go off certain vitamins.

The only drugs I have heard that can directly help with the acute symptoms of hyperacusis are the benzodiazepines.  But they are highly addictive. 

Bonnie

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